Vent about Permanent Neuropathy

I am always trying to assess if I am any better, too.  At this point, it is hard because there are some days better than others.

Strangely, now a year PFC, my fibromyalgia has returned.  (Why was it gone for a year?)  Anyway, it is in my hands and feet, but feels totally different than the CIPN.  Just creates a double whammy sometimes.  

I have noticed that the approaching colder weather seems to deaden my feet more than they were in Summer. 

One more weird thing I have noticed.  My feet feel less dead when I am in socks or shoes.  Why?  Not sure, but I am thinking that a normal bare foot can feel everything, so a CIPN bare foot really notices the loss of feeling, more so than one that is covered up.  That's my theory anyway.

My "vents" on here are more observations. Here's my latest:

When I am lying on the couch or in bed and my feet are resting and not moving they almost feel like feet, but if I move them or they brush against something, then I get that "dead tingle" letting me know of their numbness. Some of you have got to know what I am talking about when I say "dead tingle." It is a feeling that is a lack of feeling! I rarely have pain from the CIPN, it's just the deadness of my not-feet.

The other part of my report this month is that my numbness might only be around 15% now (on a good day that is.) The areas affected are slightly different on each foot, so they don't feel exactly the same. Lefty has a bit more intensity of numbness, righty has a larger affected area.

I can LIVE with this, because I am living, right? Sure hope I can continue to improve and eventually get to no numbness at all. All things possible! Keep healing ladies!!!

mine is worse when it is cold so not happy going into winter~~

does anyone have leg pain and fore arm discomfort from the neuropathy? It's not just in feet and hands ....Rosie

BB, sorry about your problem, have you considered a good ENT?  I have one for my dang sinus issues and now realize that ENTs work on more than just sinus and some might be off help to you.

yeah, I do get it on the job thing, always thought I would retire from my job and work part time somewhere like in retail or something as I was in sales.  But they all want you to be on the feet for a full day and no way could I do that

I am confused...why would a person doing an echo gag? That is horrible

Seriously ladies....I cannot believe the difference in my neuropathy issues since I started with my "herbal" treatments. I did not expect such goo and lasting results. I will find the study that I came across so you can check it out.

oh Bosum , will continue to lift you up in prayer. Snuggle in, and pull out all the tools that work for you!

I still don't know if my SE is neuropathy or not. Today yes the bottom of my feet really hurt. Not tingling though thighs feel like I caught three baseball games. Hmmmm. SE from taxol maybe

Bosum, thinking of you also as it seems most of the country is cold and nasty so hoping you can find some relief with some warmth?  Gee, I just found a pair of fleece slippers that are too small for me, they are really warm, wonder if you could use them?  they are about a size 8 and for now, plan on sending with my next pack to Lupus folks?

Bosum - I can give you a small glimmer. My neurologist said 70% of people get some better but it takes up to 2 years after chemo. Looking at your diagnosis date I'm guessing you're only a year out??

I'm almost one 1 year PFC (not counting Herceptin) and I do have more feeling in my fingers. I can pick up pennies now and zip up my jeans, and I can wring out my washcloth better & usually open jars w/o help. So I'm still hoping for improvement, especially w/my feet.

MinusTwo, Glad to hear that you can pick up the pennies now. That is an improvement! (Not to mention being able to zip ya' drawers up.)

I have it in my feet and now have tooth sensitivity to hot and cold - anything not room temperature. Neurontin helps but doesn't eliminate it. It feels like it is not working, until I stop taking it and realize how inch more it hurts without it. It helps my "fire bra" too left from surgery. My nipple tattooing increased the fire bra. I feel a bit inadequate from having trouble with what is supposed to be a relatively easy procedure! They just increased my dosage to try to remedy it.

Thanks to the barrage of TV ads from pharma, including those for Lyrica, my mom called me to proclaim that if I have neuropathy, I must be diabetic. Gotta love it...

wow didn't know the teeth sensitivity was part of it also! great

so, i was a stomach sleeper all my life - arms up under my pillow - but, for obvious reasons, had to give it up when this all started ( i know it's not good for my back either) anyway, things have been feeling better ( too bad i'm under the knife again next week) so i have been allowing myself some stomach time at night - but my arms go completely numb! not tingly pins & needles - just numb - hands are like gone. Is this a product of the neuropathy as well?? it's both arms equally so I don't think it's lymphnode related.

I am also trying a new cream - Topricin - that seems to be working well on my feet - and it doesn't smell!

and here come the holidays - ready or not! hope you are all able to enjoy them with loved ones

Bosum - what supplements are you considering? I've been taking B-12, B-6 and acetyl L Carnetine for neuropathy since I started chemo in March 2013, but I stopped all my supplements last week to see how that turns out. My neurologist said those three were OK but not to take too much B-6 - that it could cause more neuropathy issues than it solved - so I'd scaled back to 100 mg/day plus what's in Centrum Silver.

I agree w/ProudToSpin - a journal can be a marvelous tool.